June was a month of advocacy, collaboration, and progress across the FH Europe Foundation network, with important developments in EU policy, rare disease advocacy, research, and patient engagement. As summer begins, our community continues to drive forward early detection, prevention, and equitable care for inherited lipid disorders.

Catch up on the key highlights from the June 2026 edition of Heart Beat:

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At FH Europe Foundation, we believe that meaningful change begins by listening—truly listening—to the communities we represent. That is why we are proud to be part of an important new initiative led by EURORDIS, in collaboration with Rare Diseases International (RDI): the establishment of a European Regional Task Force on Rare Diseases.
This is more than another working group. It is a significant step towards ensuring that the voices of people living with rare conditions, including homozygous familial hypercholesterolaemia (HoFH) and familial chylomicronaemia syndrome (FCS), are embedded in the policies that shape their care, treatment, and future. The Task Force has a clear and ambitious purpose: to contribute to the development of a European Blueprint for Rare Diseases. This Blueprint will serve as a multi-stakeholder framework designed to guide future action at both European and global levels. Its outcomes are expected to inform:
This positioning is critical. For years, the rare disease community has called for stronger, more coordinated policy action. While national plans have made progress, there remains fragmentation across countries, inconsistencies in care, and unequal access to diagnosis and treatment. The Blueprint—and the Task Force behind it—offers a chance to move from patchwork progress to aligned strategy. Inherited lipid conditions such as HoFH and FCS are often under-recognised in the rare disease space; it is still invisible and does not fit in the typical box. Initiatives like this ensure that:
By participating in this Task Force, FH Europe Foundation is helping to ensure that the realities of our community—early screening needs, family-based care, lifelong management—are reflected in wider rare disease discussions. However, participation alone is not enough. A critical question remains: Will this Task Force deliver meaningful influence, or risk becoming another consultative exercise? There is growing recognition across European health policy that patient involvement must go beyond “a seat at the table”. True engagement means:
The strength of this initiative will depend on how well it translates lived experience into actionable policy recommendations—and whether institutions are ready to act on them. The creation of a European Blueprint is a major opportunity, but it also comes with challenges that must be acknowledged:
Opportunities
Challenges

For FH Europe Foundation, this means continuing not only to contribute to the discussion, but to champion the needs of our community—helping ensure that commitments made at European level translate into tangible improvements in people's lives.

Together with EURORDIS, RDI, and partners across the rare disease community, we remain dedicated to driving meaningful change. Central to this effort is ensuring that the voices of people living with HoFH, FCS, and other inherited lipid disorders, as well as their families, are not only heard but reflected in concrete actions and policies.

By bringing forward lived experiences, sharing evidence and insights from our key initiatives and EU-funded projects, and advocating for practical, measurable solutions, we aim to advance earlier detection, more effective prevention, and greater equity in care across Europe.

The establishment of the European Regional Task Force marks an important milestone—but it is only the beginning. The real measure of success will be whether this work leads to:
We will continue to engage actively in this process and keep our community informed as the Blueprint develops.
To learn more about the initiative, visit the EURORDIS website: Developing a European Blueprint for Rare Diseases: How this work will unfold - EURORDIS-Rare Diseases Europe
Together, we can ensure that European and global policies reflect the realities—and the needs—of those living with rare conditions.

May was a month of strong global engagement and policy momentum across our community, with key milestones at the World Heart Summit, World Health Assembly, and EAS Congress reinforcing the importance of early detection and prevention.

Looking ahead, growing EU policy discussions and continued collaboration across research, advocacy, and patient engagement signal an important period for advancing recognition of inherited lipid disorders and strengthening cardiovascular health systems.

Catch up on the key highlights from the May 2026 edition of Heart Beat:

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Research & Community Engagement:

Network News:

Partner News:

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We are pleased to announce the publication of two major European Atherosclerosis Society (EAS) consensus statements:

  1. Familial hypercholesterolaemia in children and adolescents
  2. Lipid clinics worldwide: harmonisation and guidance on how to optimally organize and fund

Both statements were published simultaneously on 25 May 2026 and presented during a joint session at the EAS Annual Congress 2026 in Athens, Greece.
These landmark publications represent important advances in early detection, prevention, and lifelong management of inherited lipid disorders and cardiovascular disease.

1.Advancing early detection and care of familial hypercholesterolaemia in children and adolescents: a consensus statement from the European Atherosclerosis Society

EAS consensus statement FH

The new consensus statement highlights the need to improve the detection and management of familial hypercholesterolaemia (FH) in children and adolescents. The panel proposes widespread paediatric screening, earlier treatment, and updated approaches to diagnosis and care.

FH is a common genetic disorder characterised by lifelong elevated low-density lipoprotein cholesterol (LDL-C), which increases the risk of premature atherosclerotic cardiovascular disease (ASCVD). FH occurs in two forms: Heterozygous FH (HeFH), affecting approximately 1 in 300 people worldwide, and the rarer Homozygous FH (HoFH), affecting around 1 in 300,000. Individuals with HoFH, if untreated, are at extremely high risk of cardiovascular complications, already in childhood.

In the decade since the 2015 EAS consensus statement on FH in children, knowledge of the pathogenesis of FH has increased markedly, and a wider range of LLTs is now available (although access and reimbursement remain country-specific). This updated EAS consensus statement, co-chaired by professors Albert Wiegman and Jeanine Roeters van Lennep, provides revised diagnostic criteria, updated LDL-C treatment goals, and practical guidance on managing FH in children and adolescents. It emphasises the importance of starting LLTs early, ideally from the age of 6 for children with the HeFH and from the time of diagnosis for the children with the HoFH, and provides treatment algorithms for both HeFH and HoFH. The statement also addresses the transition to adult care and implementation strategies.

What is new in this EAS consensus statement?

Over the past decade, major advances in understanding FH have been accompanied by the development of a broader range of LLTs. Despite this progress, FH remains underdiagnosed and undertreated, particularly in children where it is rarely identified despite being one of the most common inherited conditions. “This is a missed opportunity, because we now have highly effective treatments that can normalise cholesterol levels and prevent cholesterol from accumulating in the arteries when started early in life.” says Co-Chair of the consensus and Trustee of FH Europe Foundation, Prof. Albert Wiegman (Netherlands).

Broader cardiovascular health implications

This important consensus statement comes at a very timely moment, following the announcement of the EU Safe Hearts Plan, where significant emphasis is being placed on cardiovascular health (CVH), early prevention, child health, and screening. With the recent call for evidence for cardiovascular health checks, the publication marks another important and highly practical set of evidence-based clinical recommendations for tackling cardiovascular disease (CVD) from early in life.

To address gaps in diagnosis, the EAS consensus panel proposes updated diagnostic criteria aimed at improving detection rates in younger populations. The panel also encourages all countries to establish paediatric screening programmes for FH.

Systematic screening approaches, including family cascade screening and universal paediatric screening in the first decade of life, have been shown to improve detection rates and to be cost-effective, but are not consistently used worldwide. “We cannot rely on chance diagnosis in adulthood,” says Co-Chair of the consensus and Scientific Advisor of FH Europe Foundation, Prof. Jeanine Roeters van Lennep (Netherlands). “Systematic screening is essential to find children with FH early and intervene effectively.”

Furthermore, the paper recommends testing for lipoprotein(a) [Lp(a)] in all children with suspected FH at the same time as paediatric screening, but not before 5 years of age.

We are delighted to share that Magdalena Daccord, FH Europe Foundation’s CEO, was one of the reviewers of the consensus statement.

Read:

2.Lipid clinics worldwide: harmonization and guidance on how to optimally organize and fund: a European Atherosclerosis Society consensus statement across 55 countries and more than 500 lipid clinics

EAS statement lipid clinics

Atherosclerotic cardiovascular disease (ASCVD) remains the leading cause of death worldwide, responsible for one in three deaths globally. Despite major advances in lipid testing, preventive therapies, and international treatment guidelines, implementation of optimal lipid management remains highly uneven across countries and healthcare systems.

Lipid clinics offer specialist care to patients at highest ASCVD risk and with rare lipid disorders. They play a key role in increasing and improving education about lipid disorders among other healthcare professionals, in organisation of national registries, and in promoting awareness of the societal benefits and reduced costs of improving prevention of ASCVD. The EAS-Lipid Clinic Network has been established so that lipid clinics from all over the world can work together to tackle shared challenges and learn from mutual exchange.

This new consensus statement from the EAS Lipid Clinic Network, involving more than 500 lipid clinics in 55 countries, highlights one of the LCN's main aims - the need to harmonise the diagnosis and management of lipid disorders globally.

Co-chair of the statement, Dr Christian Bork (Denmark) said: ‘We identified major differences between clinics, nationally and internationally, in the delivery of guideline-recommended patient care. While almost all clinics followed guidelines, there were issues with implementation, especially for diagnostic testing, treatment and follow-up. We have excellent evidence-based guidelines on dyslipidaemia, and developing more guidelines is not the answer. Instead, we need to focus on how we organise and operate lipid clinic networks to ensure harmonised patient care, adapting to the realities of access and funding across different regions.’ Co-chair and EAS President, Prof. Borge G. Nordestgaard (Denmark) added: ‘Harmonisation is crucial to ensure optimal patient care, and ultimately to reduce the burden of preventable cardiovascular events such as heart attacks and strokes.’

Based on the 2024 EAS Lipid Clinic Network survey, the paper identifies several key areas for improvement, including increased education nationally and internationally, harmonisation of clinic organisation and treatment, guidance on staffing, development of national registries, and structured dialogue with governments to support funding and reduce the healthcare burden of ASCVD.

The consensus marks an important milestone for the clinical and patient communities by prominently including lived experience and a patient perspective. Elsie Evans, FH Europe Foundation Ambassador Programme Manager and a person living with HoFH, has been involved right from the beginning as an author of the publication.

The consensus statement provides practical recommendations for establishing well-functioning lipid clinic networks, including standards for diagnosis, treatment, multidisciplinary collaboration, education, and funding, with a particular focus on improving care in regions with high cardiovascular burden.

Read:

Together, these two EAS consensus statements reinforce the urgent need for a life-course, systems-based approach to cardiovascular prevention, from early screening and detection in childhood to equitable access to specialised lipid care across healthcare systems. They represent an important step towards reducing the burden of preventable cardiovascular disease worldwide.